About 30 or more years ago I was diagnosed with chronic pain. I’d had low back pain for a couple of years and I was finding it SO hard because of my work in Older Person’s physical rehabilitation. I had treatment after treatment with no change in my pain. I had an X-ray that told me I had a “transitional” vertebra. I thought this explained why my pain persisted and I was hoping someone would be able to “unstick” this vertebra and my pain would be gone. I was referred to a chronic pain management centre and the wonderful Dr Mike Butler, Rheumatologist and pain specialist there told me “There isn’t a medical answer to your pain problem.” Luckily for me he didn’t leave it there – he suggested I read The Challenge of Pain by Melzack and Wall.
But I will admit, I walked away from that appointment feeling absolutely devastated, thinking “I’ll have to live like this forever”.
What I didn’t know at the time was that the way Dr Butler gave me this news is a rarity. I am so grateful that he did, even though I was completely floored and had no idea about what I could do to get on with life. (I began searching the libraries for information on chronic pain, and came across a book by Connie Peck in which she described a behavioural approach to increasing function – and I used this after having devoured the Melzack & Wall book).
Things that were done well:
- My physical examination results were fully described and explained to me. While I didn’t have any beliefs about possible cancer or ending up in a wheelchair, it was good to know that my examinations were completely normal with the exception of allodynia and widespread pain over my entire back.
- I was given the news pretty straight. Being told “there isn’t a medical answer to your pain problem” meant I stopped looking for the complete cure. And I never once got the suspicion that anyone thought the problem was psychological, fabricated, or that I was just a bit pathetic.
- Being given additional resources that gave me information over and above the basics really helped. The book by Melzack and Wall was a real stretch for me at the time, lots of explanations I didn’t fully understand – but it satisfied my curious mind, and gave me a full explanation that helped me make sense of what was going on. And it opened the door for me to realise that my pain wasn’t an indication of ongoing damage. It also gave me an understanding that what I believed, thought and felt could influence my pain. And that was a powerful thing.
If you’d asked me whether I “accepted” my pain, I think I would have clubbed you! I did NOT want this pain. I was still looking for things to reduce my pain – or at least not flare it up. The realisation that my pain would do what it wanted, when it wanted, was something I could only learn over time. And this is an important point: there are some things we need to go through as part of a process. Simply telling someone something does not inevitably mean it’s going to hit home at that time, unless the person is ready (think stages of change here).
If I frame this process within the findings from my research, the first part of learning to live well with pain is making sense. Making sense requires diagnostic clarity, and part of that is having a prognosis. This helps shape future expectations. It’s incredibly difficult to plan a future when the future is hazy. Delaying the point at which the ongoing nature of persistent pain is made explicit seems to me to be delaying the point at which the future becomes clearer – and I think this in turn prolongs disability and distress.
Drawing from my reading around the subject, I think the following might be a useful and pragmatic approach to advising someone that their pain is likely to remain. I hope people living with chronic pain will chime in here and help me out – what would this approach have been like for you?
- Ensure examinations are explained – especially what you’re looking for, what you’ve found, and what this means. And particularly explaining what negative findings don’t mean.
- Avoid looking for the mythical and improbable “rare” disorder. Especially if this means delaying the point at which you have to say “and this pain isn’t likely to go away”. I think this is something many medical practitioners are afraid of. Rare disorders are just that: rare. And most of the ones that will kill or disable have very clear indicators apart from ongoing pain. You KNOW this, so let your patients know this.
- Find out the main concern of your patient. In my case, it wasn’t that I was going to die or end up in a wheelchair, it was much more about “how am I going to live like this – suffering – for the rest of my life!” The “suffering” part was the REAL problem, not the pain per se.* What a shame so few health professionals even bother to find out about their patient’s main concern – maybe it’s feeling old before your time, maybe it’s about becoming a parent, maybe it’s about being just like my mother, maybe it’s about sleep, work – whatever.
- Directly address the main concern of your patient. Reflect that you’ve heard what their main concern is. Say it back to them, and yes, even use cliched phrases like “It sounds like” – whatever you do, make it clear you’ve heard the person’s main concern. Then begin to discuss what can be done to address that concern. It might take another appointment to do this, but that’s a whole lot better than sending your patient back home without having had his or her concerns understood – or worse, to ignore those concerns and send your patient off for another round of treatments that just don’t help them resolve whatever that concern is.
- Give space and time for your patient to get their head around this new reality. Do this by letting them know, directly and clearly, that you’ll be there for them while they do this. You know, it might mean not “treating” the person for a couple of appointments, but instead, giving your patient the respect of providing a safe space for them to be there and process what’s going on. Don’t just begin “your” treatment programme as if nothing has happened. And don’t just send the person off without making a time to catch up again. Remember, treatment is as much about an interaction as it is about the therapeutic whatever that you use (Benedetti, 2013).
I have no idea if this approach is the right one, but it seems to me to address some of the things that people living with pain have told me. They’ve said things like “no-one ever told me it would go on”, “I just got pills but I was worried about how I could stay at work”, “I didn’t know why I was doing exercises”, “no-one bothered to find out how my relationship was going”, “they just wanted me out of the office as quickly as possible”, “I was in the too hard basket”.
The most precious thing in life is time. Perhaps we health professionals need to value the time we spend with people a little more than the procedures we carry out. Perhaps reimbursers could equally see that the active ingredient in most treatments is the interpersonal part – and maybe this should be funded well.
*Suffering, to quote Eric Cassel (1999) is about the threat to self-concept – that I would not, could not, do the things that express who I am. Now I don’t think my doctor really addressed this, and I am lucky I’m a geek and love reading, because I learned this through the books I devoured. What I learned was that I could express my self-concept despite my pain. I just had to learn to do things differently.
Benedetti, Fabrizio. (2013). Placebo and the New Physiology of the Doctor-Patient Relationship. Physiology Reviews, 93(3), 1207-1246. doi: 10.1152/physrev.00043.2012
Cassell, Eric J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi: 10.7326/0003-4819-131-7-199910050-00009